Pheochromocytoma: Anyone being treated for an adrenal mass?

Anyone experiencing symptoms of pheochromocytoma?
I have had recent spikes of BP which ended up in the ER also with pain in my neck. Have had Cat Scans of chest/abdomen which are normal. Will be having a Pet Scan this week. Wondering if anyone has experienced this?

Hi @nanakouk, I moved your question to this existing discussion:
– Pheochromocytoma: Anyone being treated for an adrenal mass? https://connect.mayoclinic.org/discussion/pheochromocytoma/

I did this so you can connect with @slynnb @lisanewell68 @vlk420 @dawn_giacabazi @janfam @jeanern01 @parve @larak @packard68 @jimmysherif @dreneeballengee @cassieannr @ladyj5 and others.

What did the PET scan reveal? What are next steps for you?

Thank you @colleenyoung for the tag!!
Hello @nanakouk
I am very sorry to here you are not feeling well. I am not a doctor but I have spent the last eight years of my life fighting an adrenal tumor that was finally removed May 3, 2023. I was so blessed to have found help with the world's leading Adrenal Specialist at the Carling Adrenal Center in Tampa FLorida.
Are you willing to provide more information. Have you been formally diagnosed with a pheochromocytoma? What other testing have you completed?
Thanks
Dawn

I also went to Carling! He is amazing and I had the mini back surgery which took 19 minutes.

Thank you for your response…as of today I called about the authorization of my Pet Scan.. denied due to not enough previous testing done that requires a Pet Scan.. had a 24 urine test which showed elevated levels and Cat Scans/with contrast of the chest and abdomen..am waiting for the next step..very frustrating!

@nanakouk
I certainly understand. It's a very complicated and difficult process for insurance companies. Lots of red tape to break through.

When you say they did, a 24-hour in the the levels were high. Can you be specific on which levels? Have they checked any blood serum catecholamine levels? Have they checked aldosterone and renin levels? Have they mentioned doing an adrenal vein sampling (AVS)?
Are you any seeing any specialists??
What other symptoms do you have?
Prayers for guidance and wisdom!
Thanks
Dawn

@janfam
Mine took 25min.
Absolutely wonderful clinic, hospital, staff, and doctors. He's a fantastic teaching physician as well and pray that he shares his knowledge with many people so that they can also treat patients and their illnesses to the best of their abilities with the proper knowledge and training. He says one in seven people have adrenal tumors or adrenal disorders and don't even know it. That blows my mind. Just thinking about that one in seven, his mind-blowing statistics.
Congratulations on a successful surgery and I'm hoping you're doing much better now. What
Thanks,
Dawn

Go to Carling! Another dr in Miami was going to cut me open and it would have been major surgery. Dr Carling did mini back scope in 19 minutes.

I’m going through something similar right now. Still waiting on a few labs to come back. I have an adrenal mass on my left gland, that’s been getting bigger each year and my cortisol levels were out of whack. I too, just want this removed. I already had a heart attack. Was she able to have it removed as of yet?

Good morning!
Has anyone had an Adrenal Cortical Carcinoma ACC test done with your 24hr urine test? Why is this test necessary? If is it necessary for someone with exceedingly small nodule in one adrenal glands. My endo ordered this test, without explaining and informing me that my insurance may not cover it. I have done multiple urine tests with Metanephrine slightly elevated.
The ACC test was not covered by my insurance as it was reported as clinical risk and integrated clinical risk for adrenal cortical carcinoma, adenoma, or other adrenal malignancy.
Has anyone had this test done with their 24hr urine sample test?

Thank you!